Oligodendroglioma Support Group

Summary

The Oligodendroglioma Online Support Group is a private email list consisting of over 200 survivors and caregivers. Our online community is a strong emotional and informational support system. Members have expressed numerous times how invaluable this connection is to their survival in the complicated world of brain tumors. Group communication is by a private email list hosted by T.H.E. BRAIN TRUST, a 501(c)(3) nonprofit organization specializing in internet based and patient oriented brain tumor support groups.

About Our Group

In keeping with the focus of T.H.E. BRAIN TRUST, our group emphasizes the treatment, side effects, and life issues surrounding this unique brain tumor. We do not have an answer or a cure to the disease. The posts tend to be on topic and general tone is supportive, respectful and informative.

Content and Frequency of Messages

The list averages 5 messages a day, though this can and does fluctuate. When a new member comes on board, we encourage them to share something about their situation, concerns and questions. Other group members will send their replies either to the whole group, or just to the person who posted, but all are interested and share your concerns. Many members read the posts but do not post their own messages, others post frequently, others may post on occasion – it is up to you. The group is there for anyone needs it, in any way they want to use it.

Demographics

This community has members from coast to coast in the USA and from around the world. All ages are welcome. Oligodendrogliomas vary in grade and are sometimes mixed with astrocytomas. Most of the discussion within the group is relevant to anyone interested in any type of primary brain tumor so all are welcome.

Information about Oligodendrogliomas

About 1 out of every 20 (5%) primary brain tumors that are diagnosed are oligodendrogliomas. They develop from cells called oligodendrocytes. These cells make a white fatty substance that covers nerves, called myelin. It helps the nerve signals (impulses) to travel along the nerves more quickly. Oligodendrogliomas are most often found in the forebrain, in the temporal or frontal lobes. They can be fast or slow growing. They are most likely to be diagnosed in adults, although they do occur in young children. Sometimes this tumor can spread within the central nervous system, through the fluid that circulates around the brain and spinal cord. Oligodendrogliomas are usually grade 2 or 3. When an oligodendroglioma is considered grade 3, it is generally referred to as an anaplastic oligodendroglioma. It is possible for an oligodendroglioma to progress to grade 4 but once it does, it is generally referred to as a Glioblastoma Multiforme (GBM).

Brain Tumor Facts

There are nearly 100 different types of brain tumors. Tumors are classified as primary or secondary (metastatic). Primary brain tumors develop within the brain, secondary tumors start elsewhere in the body and travel to the brain. Primary brain tumors are generally named after the type of cell they developed from. Most develop from the cells that support the nerve cells of the brain. These are called glial cells. A tumor originating from glial cells is called a glioma.

Brain tumors can also be named after the area they are growing in. A tumor of the pituitary gland is called a pituitary adenoma. Oligodendrogliomas develop from oligodendrocytes.

Brain tumors are put into groups according to how fast they are likely to grow. There are 4 groups called grades 1 – 4. The cells are examined under a microscope and some chemical testing may be used in order to determine a tumor’s grade. The more normal they look, the more slowly the brain tumor is likely to develop and the lower the grade. The more abnormal the cells look, the more quickly the brain tumor is likely to grow and the higher the grade. Low grade gliomas (grade 1 and grade 2) are the slowest growing brain tumors.

You may have been told you have a benign tumor or a malignant tumor. As a rule of thumb, low grade tumors are regarded as benign and high grade as malignant. By benign, we generally mean:

The tumor is relatively slow growing

It is less likely to come back if it is completely removed

It is not likely to spread to other parts of the brain or spinal cord

It may just need surgery and not radiotherapy or chemotherapy as well

By malignant, we generally mean:

The tumor is relatively fast growing

It is likely to come back after surgery, even if completely removed

It may spread to other parts of the brain or spinal cord

It cannot just be treated with surgery and will need radiotherapy or chemotherapy to try to stop it from coming back

With other types of cancer, these black and white explanations of benign and malignant work well. But with brain tumors, there are a lot of grey areas. Some low grade astrocytomas can spread to other parts of the brain or spinal cord. Radiotherapy and chemotherapy are sometimes used to treat ‘benign’ tumors. Even a slow growing tumor can cause serious symptoms and be life threatening if in a crucial part of the brain. So, you really need to ask your specialist to explain your own situation to you fully and simply.